Monday, November 27, 2006

Blog Carnival for World AIDS Day

You can submit blog posts to the World AIDS Day/December edition of the International Carnival of Pozitivities. It is a perfect time to remember our friends and loved-ones, to recount the history of this illness, to tell the true stories of HIV/AIDS. It is a perfect time to share your voices with the world.

Monday, October 23, 2006

Testing Upheaval

“We want to go beyond ‘Who did you have sex with?’ to ‘Who do you hang out with?’” - Dr. Thomas Frieden, New York City Health Commissioner

One day last year, I checked in with the social worker at the clinic where I receive HIV care to get some paperwork out of the way. Part of her job as my social worker is to make sure I'm not isolated, since people with AIDS are at risk for social isolation. I mentioned to her that I had gone to the excellent New York Gay Film Festival with my friend Robert, and we'd had a great time at the afterparty. A strange thing happened the next time I visited my primary care physician. The doctor asked me, "who is Robert?" At first I didn't know what she was talking about. "You went to the movies with Robert. Who is Robert?" Oh, now I got it. The social worker, doing her job, mentioned the film festival in her notes; my doctor had read those notes. "Oh, Robert is a good friend. I've known him twenty years." "I thought he was your partner and you hadn't told me about him." Oh, now I really got it. This was about contact tracing. Anything I say to the social worker can be reported to the Department of Health.

Obviously, from that point on, that doctor could no longer function as my doctor. And I wouldn't say anything to the social worker either.

So this doctor thinks its her job to keep track of who I go to the movies with, and yet still thinks she can function as my doctor? I'd never seen a physician act like this before. I didn't know it at the time, but today I know the doctor was acting on guidance from the Department of Health. You really have to wonder about a Health Commissioner who can't see how bad an idea this is. It's just like one of those characters from Star Trek who are scientific geniuses but are completely baffled by human behavior.

The kicker is this: the next time I saw the doctor, she asked me, "is there anything you want to confide in me?" No, darling, that train has left the station. At least if I get picked up by the police, they are required to give me my Miranda warnings. This is an element of Dr. Frieden's idea of 'modernized' AIDS care - anything I say to my doctor can be used against me.

Dr. Frieden calls for the elimination of written consent as part of routine HIV testing, in order to test more people. Routine HIV testing is necessary because people stop having unsafe sex when they find out they are positive. "Positive people act responsibly," says the doctor. I'm glad to hear the Commissioner say that, but it is a convenient change in tune from what we heard when contact tracing was pushed through the legislature. Back then, we were 'AIDS Monsters' out there deliberately infecting everyone we could find. When the DOH asks for quasi-mandatory testing, we're so responsible. When they want to expand contact tracing, we're serial infectors: “In addition, the policy of offering partner notification only at the time of diagnosis ignores the continuing high-risk sexual behavior of many HIV-positive persons.” And on the subject of credibility, let's not forget the recent supervirus fiasco; we can now see Frieden was just lobbying for his radical changes in AIDS policy.

I certainly hope that Dr. Frieden's predictions on the link between risk behavior and HIV testing come true, but I wouldn't play the stock market based on the commissioner's fortune-telling (I'll come back to this stock market analogy). Frieden's argument ignores the fact that he is proposing to radically change the law for HIV testing. How positives behave under the existing rules may not illuminate how positives behave under his proposed changes. Without pre-test counseling and written consent, many of Frieden's new positives will be manipulated into testing before they are psychologically ready; I'd expect their behavior to be quite different from today's positives. If Dr. Frieden were an investment advisor and made a public offering on such questionable reasoning, I'd close my checkbook and run out of the room.

Dr. Frieden's proposal to routinize HIV testing may trigger increased risk-taking by negatives. A major problem in prevention today is the false idea that HIV is 'no big deal' because it is temporarily treatable; Dr. Frieden would have doctors reinforce that dangerous misperception. I remember in 1984, right after HIV was first identified, a doctor on TV declaring that it was now 'just a matter of time before we find a cure.' I took that as medical authority that I didn't have to worry about AIDS. If a doctor had ever suggested to me, even implicitly, that HIV was just 'routine', I would have interpreted that as medical evidence that I didn't need to fear AIDS, and would have increased my risk behavior.

Despite his spectacular scientific intellect, Dr. Frieden shows an alarming misunderstanding of the psychology of AIDS. How else could he ask for broad Kommisar-style powers as Health Commissioner and not realize how that would cause patients to distrust doctors, clinics and HIV service programs? How else could he use data obtained under the existing testing rules to predict behavior in a revolutionized testing environment? How else could he imagine that today's medical treatments for AIDS have eliminated HIV stigma? Anyone who has been a victim of stigma knows that stigma is not a function of fact.

continued . . .

Sunday, October 22, 2006

Testing Upheaval Part II

In my life, I've encountered several physicians--I'd say a significant minority of doctors--who, with all respect to their highly valued scientific talents, just didn't understand the psychology of AIDS. Without the protections of written consent, those doctors would have killed me by coercing me to test for HIV before I was ready, subjecting me to megadoses of stress and crippling my ability to make the lifestyle changes recommended by GMHC and community activists--changes that allowed me to survive into the protease era. The doctors just didn't get it. While I thank Heaven for the protease breakthrough, I remain wary when clinically brilliant people, like Dr. Frieden, venture out of the laboratory armed only with statistics, onto which they can imprint any agenda, just like a Rorsach inkblot.

Dr. Frieden calls for routine testing, which is controversial, rather than universal testing under Article 27-F, which would be the right policy. According to the Commissioner, Article 27-F creates a barrier to universal testing and must be abolished.

This mystical 'barrier' amounts to nothing more than the financial interests of a significant number of physicians who don't want to be burdened by written consent. (Many doctors never respected written consent even during the pre-protease era when, even Dr. Frieden acknowledges, there was very little medical benefit from testing.) Obviously, Dr. Frieden won't present his arguments in the concrete and more accurate terms of medical profit; for political reasons, he talks instead of this vague and mystical 'barrier' to care. (I'm an old Star Trek fan, so when people talk to me about barriers, I think of the energy barrier at the edge of the galaxy that prevents intergalactic space travel.) 'Barrier' is a current buzzword in business and tech circles. Dr. Frieden is using a buzzword to mask the profit issue; he's just dressing a pig in an evening dress and taking it out to dinner. His proposal for 'routine testing', as opposed to non-controversial 'universal testing', places the financial interests of hospitals over the living interests of patients with HIV. And Dr. Frieden does this presumptively. He is not basing his proposal on a cost-benefit analysis because he is oblivious to the benefits of written consent and pre-test counseling. In his analysis of pre-test counseling, the costs to doctors automatically take priority over the benefits to patients.

Dr. Frieden sees consent, confidentiality and privacy only as general, abstract matters of medical ethics. For example, he believes that since as health commissioner he already has the power to contact a patient's spouse under contact tracing, he should now have the power to contact the patient's doctor. That equation only makes sense in ethical terms; otherwise, it is a non-sequitur. Intruding into my personal life raises very different issues from intruding into my doctor-patient relationship. (To be honest, I'm more honest with my doctor than with my boyfriend, because I have to be.) Note that Dr. Frieden is explicitly sliding down the 'slippery slope', basing a new expansion of powers on a past expanion of power, despite the failure of contract tracing as a prevention tool: infection rates continue to increase among heterosexual women, the demographic contact tracing was supposed to protect.

I see written consent not just as an ethical issue, but as a screening tool designed to screen for patients who are at risk for serious psychological injury from a premature positive HIV test result. We don't need to talk about suicide as the worst case scenario, or the very likely anxiety and depression. The relevant dangers are:

1) Triggering a substance relapse;

2) Triggering a 'flight-or-fight' response to medical care.

I can personally give many examples of my own 'flight-or-fight response' triggered by the fear of premature HIV testing.

--In 1986, I was working for a financial company as a freelancer. The company offered me a permanent job, which would have included health benefits. After accepting the position provisionally, I turned down the job at the last moment for one reason: I thought health insurance would require an HIV test.

--There is a fictional patient in Bellevue Hospital's records named "Joe _________", the alias I used to get medical care at Bellevue, but preserve an 'identity escape route' if I was ever tested for HIV at the clinic. It was my plan to disappear from care if I was ever tested.

--As late as 1997, I went to a walk-in clinic for a Hepatitis A vaccine. The doctor was very interested in tracking my sexual contacts (I didn't have any at the time). I believed the doctor would test my blood for HIV without my consent, so after receiving the first Hep A vaccination shot, I left the clinic and never returned for the second shot necessary to complete my vaccination.

I emphasize that HIV denial was not driving these behaviors. I sought the Hep A vaccine because I feared Hep A would accelerate HIV disease progression; I was virtually certain that I was HIV positive. But my priority was to protect my quality of life for the time I had left before progressing to symptomatic AIDS. I had to protect myself from the severe psychological injury of a premature HIV test which would have:

1) destroyed the quality of my remaining healthy years and

2) crippled my ability to make the lifestyle changes (regarding stress, diet, sex and recreational drugs) recommended by doctors and AIDS activists to slow HIV progression. No one recommended acute insomnia, anxiety disorder, self-medication with alcohol, or depression for patients with HIV, except those doctors who tried to coerce me to test prematurely. Fortunately, Article 27-F gave me the tools to protect myself from those doctors' errors in clinical judgment.

I emphasize that I am talking about a premature HIV test. When a patient refuses to test, the proper procedure is to help that patient transition to readiness to test, using the tools (counseling, support, confidentiality) that Dr. Frieden disparages and proposes to abandon.

Dr. Frieden's argument is that the testing equation has changed because HIV is now temporarily treatable. No one can argue with his goal to get more people into early HIV treatment. The question is how to do it. I come back to the 'fight-or-flight from care' question with which I am so personally familiar. Dr. Frieden wrongly assumes that the general population is well-informed about the advances in HIV treatment. But a person proactively avoiding an HIV test may also avoid information about HIV. Today, I can pick up POZ magazine or HIV Plus and get the latest news about treatments. In 1999, I would not look at those magazines because reading about HIV threatened my defense mechanism against my AIDS anxiety. I thought protease inhibitors were just a marginal improvement on AZT, and would only prolong the period between illness and death, a period I wanted to shorten, not prolong. I feared a protacted period of suffering and invalidity much more than I feared death. To get past my resistance to testing, a skilled and humane physician would use all the tools that Dr. Frieden proposes to abolish.

The proper cost-benefit analysis of Doctor Frieden's proposals would weigh the financial resistance by doctors to universal testing with written consent against the 'flight-or-fight from care' response that Dr. Frieden will unwittingly trigger. Dr. Frieden's cost-benefit analysis is distorted for the following reasons:

1) Dr. Frieden dilutes the downside of his proposals by weighing that downside against the universe of patients, the vast majority of whom are at low to virtually no risk of testing positive. Consider, as a hypothetical example, a cancer drug that is contra-indicated for 10% of patients with cancer. Dr. Frieden would certainly want to screen for that 10%. If you included in the risk pool all the patients who don't have cancer and wouldn't take the drug, that number could drop from 10% to a negligible fraction of a percent, not worth the cost of screening, but that analysis would be ridiculous. Yet that is how Dr. Frieden does his cost-benefit analysis of pre-test counseling under routine or universal testing: he includes the many thousands of patients who don't need pre-test counseling because they are almost certain to test negative.

2) He imagines that HIV stigma does not exist because of the protease breakthrough. This theory is only a figment of Frieden's imagination. He knows nothing about stigma.

3) He looks into his database and claims there is no evidence of the 'flight or fight from care' response. But when people are proactively trying to stay off the health commissioner's radar, his database cannot gauge this phenomenon. Nevertheless, the evidence is right there in the very problem Dr. Frieden wants to solve: emergency room presentations of advanced HIV disease.

When an uninsured patient pops up on the radar screen in a walk-in clinic (as I did in 1997), it is bad policy to confront that patient immediately with a quasi-mandatory HIV test. The patient may give transient, passive or psuedo-consent and then leave the clinic and never return--as I did. I've described my own elaborate, proactive efforts to avoid premature testing: aliases, disappearing from care, even avoiding health insurance. Dr. Frieden counters with his database, which is worth little more than a Ouija board in understanding these complex social issues. That the Health Commissioner, a man as brilliant as Dr. Frieden, could make such absurd claims as "HIV stigma no longer exists" shows the inadequacy of the tools Dr. Friden uses to understand these problems.

I come back to my example of the financial roadshow. Dr. Frieden can't pass the 'E.F. Hutton' test--he'd be speaking to an empty room. No investor would be interested in his Powerpoint presentation. They would only be interested in his track record of actual results. I certainly don't blame Dr. Frieden for the disastrous AIDS statistics in New York, but there is no statistical evidence that Dr. Frieden really knows what he's talking about.

In his HIV Roadshow, Dr. Frieden likes to show a Powerpoint map of New York City AIDS statistics. The map shows a relative oasis (Chelsea and Greenwhich Village) in the middle of a disaster area (most of the city). The oasis has been the domain of GMHC, the Gay and Lesbian Community Center, and community-based AIDS organizations. The disaster area has been the domain of the Health Department, the Board of Education, the CDC and the Department of Corrections. The fundamental problem wth AIDS policy has always been this: community AIDS activists--the people who really know what they are doing--have never been the final decision makers. AIDS activists have been proven right consistently, e.g., on needle exchange, on housing, on condoms-vs-abstinence only education.

The way I see it, there is only one question for the New York State legislature: who is most competent to advise them on these complex social issues: Dr. Frieden with his clinical intellect and his database, or Housing Works, GMHC, and other community-based organizations, with their stronger understanding of the cultural and social forces at play in the AIDS epidemic.

Friday, September 23, 2005

You/Us

This is the blog link to my Save Gay Life website (savegaylife.com). Save Gay Life is my own multimedia sex history, a brutally frank look at the thoughts and feelings behind the safe and unsafe choices I've made. I'm acutely aware that everyone's sex life is their own. So I can only speak for myself and about the guys I slept with. I've been a sexually immature 'Power Top' most of my life: I'm not big on intimacy. But intimacy is central to gay sexuality. Personally, the need for intimacy would not motivate me to take a lethal risk in bed. For someone else, it might. So I hope the blog can go beyond my own emotional vistas. If you want to, use the blog to 'check under the hood' of your own impulses and maybe gain insight into what makes you/us tick in bed.

Monday, February 28, 2005

What Comes Around

If there is an HIV superstrain running around, I hope we won't repeat the awful mistakes of the 1980s. Unfortunately, it looks to me like we might. I know it's hard to accept, but I don't see anyway around the harshest of truths. If you have unprotected sex often (whoopee!), sometime in the next five to seven years you are going to seroconvert. It might be with some irredeemable asshole who knows he's poz but cares less about gay life than the ku klux klan. Or it could just as easily be with someone who, like you, is having unprotected sex and seroconverted within the past year or so and doesn't know it yet. If he's having unsafe sex with you, he's doing it with other guys, so he's in play as far as HIV is concerned.

And it doesn't have to be a superstrain to fuck you up. The only difference between the superstrain and plain old garden variety HIV that's killed 20 million people is the warp factor--you're gonna die horribly one way or the other. Old skool HIV kills at sublight speed (knocked out of warp by protease inhibitors) and the new killer on the block does the nasty at warp factor 12.

It doesn't look like we're going to make the mistake of just ignoring the latest threat to our lives. But it looks like we might fall into the trap of wishful thinking that killed so many gay people. Wishing that all those infected superstrain carriers would just take their mutant HIV johnsons and super-infected booties and go commit mass hari kari somewhere so we can get back to barebacking in peace. That collective fantasy is a blueprint for widespread superinfection if I ever heard one.

I'm not an expert in safe sex psychology, but I know what I went through in finally committing to safe sex forever. I knew HIV was out there waiting to kill me, but I wanted to have my cake and Steve's cake too. So I let my johnson do the thinking. I have a very imaginative johnson. It kept coming up with preposterous ideas to rationalize the risk of unsafe sex. First, there was the theory that 9 out of 10 people were naturally immune to HIV. Then there was the crackpot theory that if you megadosed on vitamin C, you couldn't get AIDS. Then there was the 'life isn't worth living without unprotected sex' bullshit. Then there was the co-factor bullshit. According to that theory, HIV was harmless unless your system was totally worn down from drinking, poppers, coke, pot and ectasy. So just stop drinking and fuck yourself silly, condom and worry free. Doctors bagged that theory around 1987.

There was the non-oxynol 9 bullshit. According to this theory, you could use non-oxynol 9 as a lubricant when you screwed and you couldn't catch HIV. How did I know this? The bartender at the Headless Horseman told me so - I guess he was just moonlighting from his job as head of the National Science Academy. I staked my life on non-oxynol - all I got was a rash. A year later, the manufacturer of non-oxynol 9 publicly stated that their spermicide had no effect at all on HIV.

Then there was the top-bottom dichotomy - only bottoms get AIDS, tops are safe. I read the top-bottom bullshit in an official medical pamphlet in 1983. The author said tops were safe -- except HIV hadn't even been discovered yet so he didn't know what he was talking about. That pamphlet was the Tonkin Gulf resolution of the AIDS epidemic. The top-bottom bullshit was a total disaster. It meant that tops became more aggressive because they thought they didn't have to worry. It also meant that bottoms could delude themselves that their big strong top daddy didn't have 'it'. As if there was any such thing as an exclusive top--what a load!

Safe sex psychology is a funny thing. But what do you expect when you think with your johnson? I staked my life on the top-bottom bullshit for two years, but somewhere in the back of my brain I wasn't so sure about it. So I kept reading, hoping someone would clear up my confusion. I wanted someone to tell me conclusively that, yes, as a topman you can get AIDS. No one wanted to declare that 'plain and simple' as George Bush would say. In 1986, I read an official statement: though the bottom was in greater danger, the top was at 'significant risk'. What exactly did 'significant risk' mean?

Finally I figured it out myself. The 'receiving partner' in gay sexual intercourse was playing Russian Roulette with three bullets in the gun, while the 'inserting partner' was playing Russian Roulette with only one bullet, hence less but still significant risk. Playing Russian Roulette with one bullet may be technically less crazy than with three bullets, but it's still crazy. I don't think that's a material distinction, and there was no good reason to create confusion over the 'relative risk' of topping.

Finally, after all the testosterone-driven fog about co-factors, vitamin C, magical HIV-resistant spermicides and top-bottom dichotomies had cleared away, I committed to safe sex forever.

But as I witnessed other gay guys likewise thinking with their johnsons, I heard other dumb theories on sexual risk. There was the 'only older guys have HIV' theory. That's been shot to hell. Then, 'only black people have HIV, white guys are safe.' So much for that one. Then there was the post-9/11 theory: we're going to die in a plutonium flash anyway, so why worry about AIDS?

Our johnsons are so imaginative. There seems to be no end to the 'lines' we tell ourselves, just like the pick-up lines we use to get in each other's pants. We're all gay players and our raps our strong, but we're just playing ourselves into the graveyard. The latest in a string of risk theories is the negative-positive delusion. If I only sleep with negative guys, I don't have to worry about using a condom. That's just a pipe dream cooked up by your sex hormones. I guarantee you, if you follow that strategy, you will seroconvert in the next five to seven years.

That's because the virus is going to infiltrate the negative population and spread like wildfire. After all these years, its just ungodly dumb to think otherwise. We're gay, we go at it like wildfire, and if HIV finds a way into your extended fuckcircle, it will spread. Like wildfire.

That's why I'm wary of the new hysteria about AIDS-carrying monsters knowingly infecting negative guys. Poz guys doing that are absolute bastards, and yes, they are lower than an Episcopal child molester. But focusing on AIDS monsters can perpetuate the negative-positive delusion and make it psychologically impossible for negative guys to commit to safe sex. As long as there's a dumb theory about HIV floating around, your johnson is going to believe it. It's tempting to think that if only all those AIDS carriers would just go live on a barge in the middle of the ocean, you could just fuck yourself silly, condom and worry free. It's so tempting that the delusion has to be squashed before it kills you. So I will repeat: If you have unprotected sex with multiple guys you think are HIV negative, you will seroconvert in the next five to seven years.

So you have to live with safe sex forever. That takes some imagination and a long, hard, clear look under the hood at what makes you tick sexually. But it is possible and it's really not that bad. And you have to practice putting on condoms in private until you get the hang of it. More later.